Thursday/Friday

Sara continues to do well. No changes medically, and that will be our new norm.

I received a listing of home care agencies today. I have to start calling all of them to find a service that takes the MediCAL (most do) and have staffing so I can bring Sara home. The program also requires that at least three of us here are trained to care for her - ventilator, dressings, tubes, cleaning her, managing tube feeds, etc. That is in case of emergencies - like the nurse doesn't show up, etc. I'm one... I asked Michael and he doesn't really want to do it. I can understand that...he's a kid...and becoming someone's caregiver is not normally on a kids list of things to do.

I went and hung out with Sara lastnight. Nurse-Deborah brought in a bag of VHS videos and Sara's been watching movies today. They moved her to a room that has a VCR, so she's getting to see something more interesting than her surroundings and basic TV.

I talked to her for a long time, too. Oh, and I also re-did one of her communication boards. This is broken up into 5 different sections - physical, interests, feelings, social and alphabet. I simplified it so that the nurse can ask her what her need is and she has 4 basic selections, then a brief list and options so that it is easier for the nurses to communicate with her. She is solid on everything yes and no, but there is so much more for her to say than that.

She coughed a bit and I ended up steadying her by putting my arm around her shoulder (she had come off the bed with the strength of her cough). When she relaxed after her cough I told her I missed holding her. She said Yes. I asked if she missed it too. She said yes. So I put down the bedrails and got my arms around her, rested her head on my shoulder and rocked her. It was so nice. When I closed my eyes I could just feel her against me and shut out the sounds of the ICU...she and I could just be in the big chair in the living room... After a long while I pulled back and looked into her face. I could see she had missed it too. Now that she has the collar off I just have to be careful, but she's not so fragile now and I can hold her. Just don't knock off her breathing tubes and we're good. So I will. It gave me such a good mommy feeling - I had forgotten how good it could feel to just hold your child...

Friday Tracy and Michael went up to see her on the way to Tracy and Denise's house for the weekend. I'll let Michael update anything. Sunday Daniel and I will be at the hospital giving Sara a nice spa day. Her skin is really starting to show the effects of being in the hospital for now 92 days. Yeah, we went past 90 days. Hard to imagine its been that long, hard to feel its been that short...